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Maidstone Support Group

Contact: Margaret

Tel: 0300 999 5090

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Maidstone Support Group meetings are normally on the fourth Monday of each month at The Early Bird pub.  When the Monday is a bank holiday, the meetings will be held on the fourth Tuesday.  See below for upcoming meetings in Maidstone and surrounding area.

The Early Bird, Minor Centre, ME14 5TQ

11am - 1pm

RSVP: It helps us to prepare if we know you are coming - please email: maidstone@pmrgca.org.uk

South East England What's On

Chichester meeting - Wednesday 8 May 2019

Wed 8 May 2019
Pagham Village Hall, Pagham Road, Pagham, PO21 4NJ

Worthing Meet Up - May 2019

Tue 14 May 2019
Durrington Community Centre, 2 Romany Rd, Worthing, BN13 3ED

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Maidstone Support Group

Maidstone Speaker meeting - March 2019

Monday 25th March 2019

Monday's meeting was composed of a talk by Pal, Margaret's pharmacist, and his trainee, who gave us a talk about PMR and GCA symptoms and the medications we should take to avoid a lot less pain in our lives!

We discovered that pharmacists are an underused source of knowledge and are vital to the future of the NHS. It's a profession that's developing by the day and training is ongoing, with pharmacists required to undergo at least 60 hours a year of continuing professional development.

Questions arose about coated versus uncoated steroid tablets... the uncoated variety are less kind to the stomach of course but they ARE cheaper... every penny counts in the NHS budget.

The subject of statins arose. Some people are opposed to statins and one member admitted that she takes plant sterols instead

Vitamin D was heavily endorsed by Pal, we need to get out in the sun with bare arms every day for at least ten minutes. Two local doctors have stated that nearly everyone suffers from a lack of Vitamin D in this country.

DEXA scans were mentioned as was Alendronic Acid. Some people can tolerate it but others find it is a problem, however Pal agreed that some sort of bone protection is needed by those on steroids. He stressed that dentists should be informed by patients who are taking such medication.

Dentist's should also be advised when we have a Zoledronic Acid infusion. As with Alendronic Acid any tooth extraction should be undertaken in a hospital

Unrelated to PMR/GCA, Dentists should also be informed if their patient has a pacemaker! It appears that certain dental equipment can send a pacemaker crazy.

Many thanks to Pal and his trainee for a very interesting session.

Our next meeting is on Tuesday 23 April 2019.  There will be a talk and demonstration by a Tai Chi expert.

Maidstone - February 2019

Monday 25th February 2019

The meeting was a lively one and many opinions and suggestions were delivered for a draft of "Tips for new members" idea. The one thing everyone agreed on though was "keep it short."

I advocated always carrying a steroid card or key ring to alert emergency services. 

The first thought of a very recent member was Kate Gilbert's book, which he has read three times already and to which he returns every time he has a flair. He found the dietary suggestions in the book of great help. One interesting fact is that one should not eat grapefruit when taking steroids, nor should one consume liquorice.  Other group members agreed that the book has been very informative.

Several people extolled the virtues of pure Aloe vera juice which aids digestion and, according to them, helps to reduce the steroid dose faster. They have found that Aloe vera gel is also good for alleviating the effects of sunburn and in the opinion of one member has cured her grandson's eczema

DEXA scans were also considered a very good tip.... several group members had to fight to get their GP to arrange one, and one member in particular is fed up asking and getting nowhere, so intends going down the private route at a nearby clinic at a modest charge. I believe one GP didn't know what a DEXA scan is....

However, the main thing about DEXA scans is that the patient must ALWAYS go to the same machine since the readings vary from machine to machine. A base line needs to be established as soon as a patient is diagnosed with PMR or GCA.

This led us on to the bone strengthener Alendronic Acid and the fact that dentists refuse to deal with tooth extractions out of a hospital environment. Other bone protectors are available which don't cause this problem but if on Alendronic Acid one's dentist should always be advised.

Stomach protectors such as Omeprazole and Lansoprazole were mentioned but the group pointed out that these themselves carry their own problems and that older, kinder, protectors, such as Ranitidine are still widely used. The two former mentioned protectors should not be taken in the long term. Some members on lower steroid doses prefer to take yoghurt with their steroids.

This subject led to when steroids should be taken, morning or evening, or even late at night so that the dose has kicked in by morning....  or should the dose be split? We could not agree on this and of course everyone is different and the body moves to its own rhythm.

Warnings about Cushing's Syndrome were also considered a good idea since several of us had been alarmed by the appearance of huge bruises caused by a relatively minor "bump." The thinning of the skin, particularly on the shin area caused problems for some who, like me, tend to take "shortcuts" when walking round the house or garden and bump into furniture or door frames etc.

Sleep can be a problem some members revealed.... various solutions have been sought, from lavender pillows to CBD oil. The latter appears to affect the way the brain "sees" pain.

Vitamin D... ten to twenty minutes bare arm exposure to sunlight a day, without sunscreen, can provide a day's worth of vitamin D.  A GP was reported saying everyone in this country suffers from a lack of vitamin D. 

The Green Bottle scheme, which the Lions Clubs provide, is a good idea, it  alerts emergency services to the medications of the patient. The website is www.lionsclubs.co

All Maidstone support group members have been provided with a bottle thanks to the local Lions group in Medway.

Exercise was also mentioned, one member likes to "ground" himself now and again by walking barefoot on the grass in his back garden. He also likes to lie on his back on the grass, close his eyes and do a spot of meditation combined with breathing exercises. It has a very calming effect.

Another exercise mentioned by a member was to place her hands flat on her diaphragm with the tips of her middle fingers just touching. She then breathes slowly in through her nose, to a count of five. She holds the breath for a few seconds then slowly breathes out through her mouth. If done correctly, the fingertips should part. She has worked up to the count of ten so far. 

Tai Chi, which is the focus of our 23 April meeting, is also supposed to be very good for PMRGCA sufferers as it is a very gentle form of exercise.

Flu jabs, which don't always work of course, should be accepted since immune systems are compromised when steroids are taken.

Our next meeting is a talk by a local pharmacist on MONDAY 25th March, followed by a Tai Chi talk and demonstration on TUESDAY 23 APRIL.

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